Mother on pelvic pain trial welcomes rise in Milton Keynes research

A mum who was sterilised because of lifelong pelvic pain and is now taking part in an NHS research trial into her condition has welcomed a rise in health service research in Milton Keynes.

Samantha Russell, 34, from Buckingham, is taking part in a drug trial at Milton Keynes University Hospital to treat chronic pelvic pain in women.

There were 2,788 participants in 59 studies supported by the National Institute for Health Research (NIHR) at Milton Keynes University Hospital NHS Foundation Trust in 2017/18.

A further 444 people took part in 14 studies in Milton Keynes’ GP practices.

The NHS supports research by asking patients and healthy volunteers if they wish to take part in trials to enable participants to access new NHS treatment and care options.

Chronic pelvic pain is commonly caused by endometriosis, a long-term condition where pieces of womb lining are found outside the womb, such as on the ovaries, leading to painful periods. However, the cause is not known in around half of cases and it can be difficult to treat.

The GaPP2 study is looking at whether gabapentin - a painkiller for other chronic conditions - is a safe and effective treatment for chronic pelvic pain.

Women on the study are given gabapentin or placebo (dummy drug) tablets for sixteen weeks, to compare the two. Neither the researchers nor the participants are told which they are receiving. This is a common practice in research to prevent bias affecting the trial results.

Mrs Russell, 34, has been experiencing chronic pelvic pain since she started her menstrual cycle in 1998 aged 13.

The mother-of-two said: “I would have a week off of school per month and used to pass out with pain, it was that severe.

“That went on for a few years with doctors telling me that it was just a woman thing and to put up with it. They put me on different pills and painkillers to help with the pain, but none of them worked.”

Mrs Russell’s pains stopped in 2004 when she became pregnant with her first child at 19 and her pains returned in 2008 at 23 when she was diagnosed with endometriosis. She said: “When the pain came back, it was no longer monthly when I was on my period, I was constantly suffering.”

After her diagnosis, she experienced five miscarriages over 18 months before eventually becoming pregnant with her second child in 2010.

Mrs Russell said: “The miscarriages obviously affected me quite a bit. I was distraught when I was having them. I was never really career minded; I always wanted to have children. Because my first pregnancy was healthy, I was shocked that I kept miscarrying.

“My health during my second pregnancy was pretty awful, I spent a lot of my pregnancy in and out of hospital.

“It was amazing, we were obviously very surprised. It was a rollercoaster throughout the pregnancy and I went through each month expecting the worst that could happen.

“I decided to be sterilised because I didn’t feel that I could emotionally cope with that again. I couldn’t put myself or children through any more miscarriages or stays in hospital.

“Since then my symptoms had got steadily worse. My periods are horrendous, I have to schedule my plans around them. Sometimes I can’t even leave the house because the bleeding is that bad.”

In October, Mrs Russell was told she no longer had active endometriosis after surgery to examine the condition, however she was still feeling pains.

She chose to begin the study in April and said: “My surgeon told me about the drug trial and at first I felt quite sceptical because I’ve taken so much medication that doesn’t manage the pain that I don’t want to be taking it anymore.

“There was a lot of thinking about it, I went online and researched it myself before I agreed to doing it. I eventually decided to take part because nothing else I had been offered was working and life is pretty miserable being in a lot of pain.”

Mrs Russell, a dental nurse trainer, said: “My monthly period pain is still horrendous and I’m still bleeding very heavy.

“Without these research projects, what hope is there for everyone else? I’ve got two girls who could potentially have this problem, and without these research projects, nobody’s going to find a cause or way to treat it.”

The GaPP2 study is led by the University of Edinburgh and NHS Lothian, with support from the University of Birmingham Clinical Trials Unit.

Professor Andrew Horne, from the University of Edinburgh's MRC Centre for Reproductive Health, who leads the GaPP2 study, said “Chronic pelvic pain is as common as asthma and diabetes in women, and can have a huge impact on quality of life. We hope that the GaPP2 study will tell us whether gabapentin is a safe and effective treatment for this major health issue.”

Prof Simon Bowman, Research Director at Milton Keynes University Hospital NHS Trust, said: “The trust continues to perform strongly as a research active hospital with over 50 active studies and over 2,500 participating in studies in 2017/18. Samantha's story is a powerful and inspiring illustration of the benefits of helping others through participation in research.”

Prof Belinda Lennox, Clinical Director for the NIHR Clinical Research Network Thames Valley and South Midlands, said: “The Thames Valley is leading the way in delivering life saving research in the NHS. These league table results show the huge range of research studies that are being undertaken across our region in GP practices and in hospitals across our region.

“Over 40,000 people have taken part in NHS research in the Thames Valley over the last year, all of them helping to increase our understanding of illness and develop the treatments of the future. As the NHS celebrates its 70th birthday, public participation in research is helping the health service develop and strengthen for the future.”